Elissa’s Myeloma Journey: Persistence Matters
Elissa
State: New York
Congressional District: NY11
Diseases
Cancer
Issues and Challenges
Elissa has encountered: Access to Medicine, Copay Issues, Surprise Billing, Transportation
My Story
ln January 2017, I was 54, in what I thought was decent health and was physically very active. I was insulin resistant and under a doctor’s getting regular lab work and other than low Vitamin D nothing was out of ordinary. I survived a cancer scare in 2011-melanoma that was caught early and after excision needed no treatment but I still made sure to get annual screening. I was suffering pain in my ribs and down my left arm but I had been diagnosed years before with cervical stenosis and already had a follow up MRI on the books for September. And my cat had tripped me down the stairs and figured the fall must have done something to my ribs . Local orthopedics (mistake #1 on my part) dismissed the pain and said ribs takes years to heal. So instead of insisting on an MRI I carried on and had plans for an action packed year.
My husband John and I drove my snowbird Dad’s car to Florida for him and spent some time in sun. John retired from his government job in 2015-mandatory retirement at age 57, but got his PI license and was also doing a lot of international training and consulting. I was helping him and was also working doing freelance real estate legal stuff. We had a lot of work to do with my Mother-in-law who was beginning to show worsening signs of dementia but I was able to secure good care for her in her independent home to help alleviate some of my burden. In May/June we went to her family home in Croatia to visit and get some paperwork done. We had planned on travelling around a bit but I found myself extremely fatigued and having more pain, so we just relaxed. When we returned home, we had relatives from Croatia stay with us for a week. It was exhausting but we loved hosting them. Shortly thereafter local relatives on the verge of a contemptuous divorce with two wild kids under 6 came to visit for a week and after they left I could not move off the couch from extreme exhaustion. I just attributed it to the fact that I turned 55 and was middle aged.
By the beginning of September I was dragging and in pain but I soldiered on. I went on a cousins trip to Savannah and I faked it running rings around my younger cousins. Two days after I returned home, I had my MRI, on a Friday. And that weekend I started to experience severe night sweats. On Monday, I get a call from my Ortho doctor that I needed to get a PETScan immediately as my MRI showed lytic lesions throughout my skull and cervical spine. Within days I was in local hospital with severe dehydration. It was a nightmare of a hospital stay. Although I was on oncology floor I never saw an oncologist, I was never shown my labs and I was scheduled for numerous scans that ended up being cancelled. I will never return to that facility. I since learned once I was able to go into the portal of local hospital that they knew I was anemic-my HGB was below 7.0- yet they did nothing for me. That horrid experience probably the beginning of my advocating for myself.
Since I was getting zero care, I checked out and was able to get a Pet scan and an appt at Memorial Sloan Kettering. Even though my Pet Scan was inconclusive-it was either multiple myeloma or Metastic Melanoma, the care and quick follow up at MSK was phenomenal. After a biopsy of one of my largest lesions it was clear I had myeloma. I immediately started treatment including three blood transfusions as I was so anemic.
My treatment plan went well. Induction therapy, radiation on lesion, followed by a Stem Cell Transplant in June 2018. By March on 2019 I was considered MRD negative and I remained on maintenance drugs. My specialist and I planned on a trial in 2022 after 3 years of remission to see if maintenance drugs could be stopped. Before I got to that point my numbers began to rise again and we both knew that it was just a matter of time that I would need treatment. In November 2022, I started a new regimen. My numbers for myeloma have remained stable putting me in a good response. However my immune system has been an issue. I got pneumonia from a virus that lasted two days for my husband in 2023 and had to be hospitalized for a week. Most recently I developed cellulitis from a bacteria that entered a small scratch on my skin. They told me I got to hospital just in time as I was borderline septic with a 103 fever and Blood pressure of 80/40. I was admitted for 8 days and am still not 100%.
I have started IVIG treatments for my immune system, getting my doctor to fight for authorization from insurance because I did not meet the standard criteria but it was clear I need it. We are currently appealing decisions for me to be able to get local labs for checking my Absolute Neutrophils- as well as being able to self inject a neupagen shot if labs warrant it. My insurance company would rather me go to the facility for labs and the shot, even though the cost is much more expensive and far less convenient. So that is where we are now.
I have always advocated for others, with health, financial and bureaucratic issues from a very young age. Where I have been less successful is advocating for myself. I do believe that if I had been more persistent in getting an MRI of thoracic spine early on I may not have been as critical at diagnosis.
My Motivation and Inspiration
My family is the reason why I won’t give up on working to make sure I have the best treatment possible. And being able to travel and enjoy these years when we can be flexible and free also motivates me.
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